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♥♫ ώïττÿ εṃεɾαlḋ ♫♥
New Member


Date Joined Nov 2011
Total Posts : 13
   Posted 11/11/2011 10:57 PM (GMT -6)   
I wanted to write a happier post than my last one, so I'm going to create a survey kind of thing. If you wouldn't mind filling it out, I'd appreciate your input! I'll post my own answers to the surgery in a reply.

I'm trying to get to know some members here and find new skills to help with my pain. Thanks!!

How old were you when your pain started?
What is your diagnosis?
What medications are you taking?
Do they help?
What non- medical coping skills work to bring your pain down?
What's your favorite season? Why?
Favorite color?
Favorite food?
Favorite website?
If you could travel anywhere in the world for free, where would you go?
And lastly, do you make wishes on 11:11?
P.s. In 3 minutes, 11-11-11 will be over.:(

♥♫ ώïττÿ εṃεɾαlḋ ♫♥
New Member


Date Joined Nov 2011
Total Posts : 13
   Posted 11/11/2011 11:17 PM (GMT -6)   
How old were you when your pain started?
I was thirteen, which was three years ago. It has progressively gotten worse. Its all-over body pain all the time now :'(

What is your diagnosis?
I've seen so many different doctors and they all have different opinions. A pain specialist and child psychiatrist was sure that I had fibromyalgia after testing the 18 points. A rheumatologist thought I had RND/amplified pain syndrome, a neurologist thought that I had dystonia because it runs in my family, and my current pain doctor thinks that I may have my back and shoulder pain because of my large breasts and it could be unrelated to the rest of my pain because in my toes, ankles, fingers,  wrist, forearms, legs, and back, it's more of a cramping feeling. My psychiatrist thinks that I have both dystonia AND fibromyalgia.

I also have mental health disorders including anxiety and depression. 

What medications are you taking?
My psychiatrist prescribes seroquel, Valium(she just switched me from klonopin to this), Zoloft(but I'm weaning off of it and I'm going to start lexapro.) My pain doctor prescribes zanaflex, which is a low-strength muscle relaxer. he also gives me 7.5mg of percocet as a rescue med. My psychiatrist wants him ti start me on Savella because she think it will help with hothead my pain and depression and work well with the lexapro.


Do they help?

What non- medical coping skills work to bring your pain down?
Heating pads or ice packs, sometimes exercise (trying to lift light 5 pound weights or walking or swimming), listening to music, watching something funny on Netflix to distract myself and laugh, drawing or painting, writing poems/lyrics/stories as well as journaling, talking to someone: my counselor at school, my mom, a friend, my doctors...

What's your favorite season? Why?
I like fall because it's not too hot or cold and the leaves are so pretty!
Favorite color?
Silver

Favorite food?
Cereal... Specifically, cocoa puffs
Favorite website?
Stumbleupon!!!!

If you could travel anywhere in the world for free, where would you go?
I want to see Italy. <3

And lastly, do you make wishes on 11:11?
Yes!

*Thank you to everyone who has supported me on this forum! I made this quick surgery and filled it out to distract myself because my pain is very intense right now and I can't sleep. I am having urges to cut and do other self-destructive things because my pain is SO awful right now and I've been feeling really hopeless lately.

Thanks again for filling this out and helping to distract me. I hope I'll learn some new coping skills that I can try by reading your suggestions!!

Trudy2
Regular Member


Date Joined Dec 2010
Total Posts : 213
   Posted 11/12/2011 11:56 AM (GMT -6)   
How old were you when your pain started? 35
What is your diagnosis? My first diagnosis was a ruptured ovarian cyst that was making me septic. They did surgery then found out I had a skin disease called pyoderma gangrenosum. They did a bone marrow biopsy the day before I got sent home from the hospital that time and the doctor only told me that I was a okay - I did not have leukemia. I was diagnosed with Acute Myelogenous Leukemia a year later - actually 8 months later. I found out that I actually had Myelodysplastic Syndrome which is a precursor to turning into different types of leukemia and he never told me. I ended up having a bone marrow transplant after several round of chemo and currently the majority of my problems have been caused by the chemotherapy and the bone marrow transplant. I have Chronic Pain, Neuropathy, Depression, Anxiety, Chronic Kidney Disease Stage 3, the beginning stages of COPD, abnormal lung ct scans, 2 bulging disks, a herniated disk, and a lateral tear in my back in one of my disks. I also recently fell with my dog and tore my rotator cuff. Due to the pyoderma gangrenosum - I am not allowed to have any elective surgeries at all - only if my life is threatened by something are they allowed to cut me open because that disease can come back at anytime. I also have hernia in my left groin area that cannot be fixed because I am not allowed to have surgery.
What medications are you taking? That is a pretty huge list - oxycontin, oxycodone for B/T pain, cymbalta, wellbutrin, fludrocortisone, clonazepam, zofran, advair inhaler, albuteral inhaler, protonix, simvastatin, and imitrex. I am also taking some over the counter supplements, but until I see my kidney specialist on November 15th I am not allowed to take anything over the counter. But before that warning - I was taking Magnesium, Multivitamin, Calcium, Vitamin D and Fish Oil Capsules. I am also not allowed to take any over the counter pain meds (NSAIDs) until after I see the Nephrologist on November 15th because my pain doctor believes that my kidney disease has progressed.
Do they help? Yes, the meds to help - but truthfully, not enough.
What non- medical coping skills work to bring your pain down? I love my heating pad and I love taking nice long hot bubble baths. I also Cognitive Behavioral Therapy to deal with the pain at times when it gets out of control. Yes, this does help immensely. I also do crafts - my favorite is counted cross stitch - but I have to be able to sit for awhile and I also need to be able to concentrate and sometimes that is just not possible so I have not been doing much crafting lately.
What's your favorite season? I don't think I have a favorite season - maybe Spring?Why? Because of my complications from Chemo I cannot tolerate extreme hot or cold. I also do not sweat like a normal person - the chemo destroyed my sweat glands.
Favorite color? Purple and all shades of it.
Favorite food? Mac and Cheese
Favorite website? 123stitch - I like to do counted cross stitch on the days that I am able to concentrate - this does take my mind off of the pain.
If you could travel anywhere in the world for free, where would you go? That is a question that I don't know the answer to. Probably somewhere out of the USA and Canada. These are the only places that I have every been to. Maybe France??
And lastly, do you make wishes on 11:11? Nope - not a one!

Hope these answers help you out!
Trudy in Ohio
DX pyoderma gangrenosum, Acute Myelogenous Leukemia, Bone Marrow Transplant, Chronic Pain syndrome, Chronic Kidney Disease Stage 3, Major Depressive Disorder, Radiculopathy, Bilateral Hip Pain, Insomnia,Left Groin Hernia, Bulging Disk in Lumbar Spine, Tear in Lumbar Spine, Tendonitis and Bursitis in both hips, hypoxia due to sleep apnea and new problems with my lungs. Have had 2 abnormal CT scans.

♥♫ ώïττÿ εṃεɾαlḋ ♫♥
New Member


Date Joined Nov 2011
Total Posts : 13
   Posted 11/12/2011 2:18 PM (GMT -6)   
Thank you SO much for taking the time to answer all of this questions! That really means a lot to me. :) I am very, very sorry that you have to go through everythng that you do. It definitely put things in perspective for me. I am inspired by your strength! <3

bayoub2
Veteran Member


Date Joined Sep 2006
Total Posts : 2861
   Posted 11/13/2011 10:11 AM (GMT -6)   
Hey witty

Pain started when I was 48

Dx fibro, Major Depressive Disorder, PTSD Sacroiliac joint dysfunction, herniated discs,
bursitis, arhtritis, PLMD and RLS, sleep apnea

Meds: welbutrin seroquel klonopin hbp meds, madnesium, potassium, muti vit, hydrocodone

Coping: deep breathing, jounaling, prayer, lots of hear and rest, hanging with my teenage daughter, a rousing game of scrabble-lol

favorite season-spring
favorite food-any crustacaen
favorite color sea green

Travel: thailand
website:Hw

That was fun
mggie
"We never realize how strong we are, until being strong is the only thing left"
Major Depressive Disorder, ptsd, fibromyalgia, chronic pain, l3/4, L4/5 gone, bursitis arthritis sciatica


welbutrin HBP meds seroquel hydrocodone magnesium potassium multi vit

flower123
Veteran Member


Date Joined Apr 2009
Total Posts : 856
   Posted 11/13/2011 6:54 PM (GMT -6)   
It's great to meet you.

Please don't cut yourself. Do you have someone to talk to about that?

Hugs,

Flower

CRPSpatient
Forum Moderator


Date Joined Mar 2011
Total Posts : 1276
   Posted 11/14/2011 2:32 AM (GMT -6)   
Hi Emerald, I hope that you do get some responses here that help you. I know that 'hang in there' sounds like something of a flip response - but I do know what all over body pain feels like and I mean it in the kindest way - things CAN improve so try your darnedest to keep fighting.

How old were you when your pain started? I was 14, but I didn't get a diagnosis until I was 20. Before then I was accused of being an hysterical teenager, a hypochondriac, was even offered a psychiatric referral by my surgeon.

What is your diagnosis? My long term diagnosis is full-body Complex Regional Pain Syndrome (aka Reflex Sympathetic Dystrophy), and it's become complicated by severe dystonia and contractures affecting both my lower legs and feet. I've got a whole host of secondary problems too - the way I walk when I don't use my wheelchair has created a massive bursa in my left foot that becomes inflamed quite often. My CRPS also triggered severe gastroparesis that is exacerbated by my use of opiates to help manage my pain and also causes orthostatic hypotension. As a result of both the CRPS and the GP, I've got osteoporosis. My OH causes me to faint, which with the osteoporosis means that I now have compression fractures in my spine at T4-T8 and T10-T12 and radiculopathy affecting my chest and legs. To top it off I've also got Carpal Tunnel Syndrome.

What medications are you taking? Oxycontin/Endone, Topamax, Mobic, Cipramil, Midodrine, Lorazepam, Ondansetron, Magnesium, Vitamin D, Intrathecal Pump (Baclofen/Bupivacaine)...also have a Spinal Cord Stimulator

Do they help? Yes, but not enough.

What non- medical coping skills work to bring your pain down? I have a variety of different methods - from my heating pad and Deep Heat gel (depending on whether I'm lying down or moving about), to Mindfulness meditation, to drawing and my Teddy Bear making, listening to music. I also have an iPad and play a lot of word games - especially Scrabble - anything to keep my mind working and away from the pain.

What's your favorite season? Spring Why? Even though the pressure changes are terrible for my pain, I love the raw wild beauty of a late Spring thunderstorm, and this time of year we get them rolling through several times a week.

Favorite color? Russet

If you could travel anywhere in the world for free, where would you go? Central and Northern Australia - I've been once, and it's one of the most magical places I've ever been. Would love to go back.
CRPS since 1999, diagnosed in 2005 and since spread to full body, spasms, dystonia & contractures, gastroparesis, orthostatic hypotension,bradycardia/tachycardia, bone spurs, bursitis, carpal tunnel syndrome, osteoporosis, osteopenia.

On Oxycontin/Endone, Topamax, Mobic, Magnesium, Florinef, Midodrine, Somac, Cipramil. Have SCS, intrathecal pump with baclofen & bupivacaine and doing physio

Chartreux
Veteran Member


Date Joined Aug 2006
Total Posts : 9664
   Posted 11/14/2011 10:27 AM (GMT -6)   
Mine is complicated as I didn't have a good childhood (my mom was told I had asthma
at birth and she refused to get me help for that so I was never on any asthma medicines
and I was a sickly child had pneumonia a lot), I got hit and spanked with a belt
as a child and had my head throw into a wall once when my dad was really upset, so I
don't like to bring up my past, and I fell hard on some ice when I was in High
School and that has caused me some pain and after my daughter was born which was
also very complicated, I had signs of RA (swollen feet) dx last year though with a good
doctor. (through everything I just kept going as life goes on as well )But a lot of my pain
was caused by a car accident in 1997, doctor's at the time said I had sprained the whole left
side of my spine, nothing was done til I got help with some chriopractor and he did some x-rays
and said my upper spine had been pushed forward so that I looked like an 80 yr old, but
he didn't do anything for my lower spine which hurt more than anything, so for years I hurt till
it got so bad that I went to a pain clinic, but got a bad first pain doc (injection crazy doctor) and he never didn't
help much, except he finally did a discogram and a ct scan of my spine which revealed damage
So I'm hoping my next pm doctor can help me out better...and I found this place which has helped me
thru a lot and I have a lot of good friends here, you will meet nice people here too...
Many many well wishes to you witty emerald and I hope you can get a low pain day soon.
(there are other things in my past but too hard to explain now and which I'd rather forget
forgetting is sometimes just better...) However you do have better things to look forward to
so give your doctor a chance to help you....many well wishes...
**********************************************
* So many dx's I could write a book* "It would be nice if we could use the edit button in real life"...
********>^..^<********>^..^<*******
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